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What A Research Registry Is, And Why The Gray Market Needs One
You do not fix an unregulated market by pretending it isn't there
M. Scott Mortensen · MD · Researcher · 3 min read
There is a gap between what medicine is permitted to prescribe and what the research has actually demonstrated. In that gap live peptides, regenerative therapies, and a long list of compounds with better safety profiles than plenty of approved drugs — and no legal home in the US market.
People find them anyway. They buy from unregulated suppliers, reconstitute at the kitchen counter, guess at dosing, and tell nobody when something goes wrong.
That last part is the actual danger. Not the compounds. The silence.
What a registry is
A patient-powered research network is a specific, defined thing, not a marketing word. It is a structure for collecting real-world outcome data from people who are already doing something, under the oversight of an institutional review board, with a protocol that says in advance what will be collected, how it will be stored, who can see it, and what happens to it.
This site operates under IRB PPRN-001-2025. That governs every data capture on the site — cycle logs, adverse event reports, poll responses.
What that means concretely:
- Anonymous by default. Submissions are tagged by participant ID, not by name.
- Structured. An adverse event report has severity grading and timing fields, because "felt weird" is not analysable and "moderate GI upset, day 3, resolved day 5, did not discontinue" is.
- Aggregated, never itemised. Poll percentages and AE rates get published. Individual records do not.
- Never sold. Not to pharmaceutical companies, not to data brokers, not to outside researchers.
- Yours to delete. Export or delete your full record at any time.
What a registry is not
It is not a clinical trial. There is no randomisation, no control arm, no blinding. Self-selected participants who chose a protocol and chose to report on it are not a representative sample, and everyone involved should say so out loud.
It is not a substitute for a physician. Nothing here is medical advice and nothing here is prescribed.
It is not proof. When you read "71% reported meaningful improvement" on a protocol page, that is 71% of the people who ran it and came back to say something. People for whom nothing happened are less likely to return to a form. That bias is real and it is not correctable by wishing.
So why bother
Because the alternative is nothing.
Right now, for most of this category, the total recorded human outcome data is: some case reports, some athlete anecdote, and a very large volume of forum posts that will be gone when the forum is. Adverse events go unreported because there is nowhere to report them. Dose ranges propagate by copy-paste from a post someone made in 2019.
Structured, IRB-governed self-report is a weak instrument. It is a much better instrument than that.
And it is the instrument that generates the thing regulators eventually need to see: a real-world safety signal, collected prospectively, with a documented protocol behind it. You do not bring a gray market into the light by shutting it down. You observe it, document it, and regulate from evidence.
What this asks of you
If you run a protocol from this site, log the cycle. Ninety seconds, anonymous.
If something goes wrong — even mildly, even something you are not sure is related — file the adverse event. Especially then. Negative data is the data this field is starving for, and it is the data that self-report systems systematically under-collect.
The protocols on this site are free and always will be. The data is the entire reason it exists.